‘You’re Wonderful’: How Society Labels CF Patients

Nicole Kohr avatar

by Nicole Kohr |

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Is one a crusader or ruthless invader?/ It’s all in which label is able to persist.”

That’s one of my favorite lines from “Wonderful,” a lesser-known song in the Broadway smash “Wicked.” I was recently reminded of this song when one of my best friends, a fellow cystic fibrosis advocate, was criticized for posting too much on Instagram.

I’ve received similar criticism and am frustrated by this response. We didn’t choose to be chronically ill; we are simply sharing our journey with the body we were given in a way that works for us.

While opening up about our disease can educate others and raise awareness, it unfortunately also leaves us vulnerable to being labeled and critiqued. Labels are subjective, but they can still affect our ability and desire to disclose our illness, and keep us from revealing our true selves. And being mislabeled can shake our confidence and make it difficult to continue advocating.

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The Benefits and Perils of Social Media

Following are some of the ways I’ve been labeled as a CF patient and advocate.

Social media

I’ve been told that I’m an advocate who educates and inspires others in the CF community, but I’ve also been told that I’m an attention-seeker who is profiting off her disease. Either way, it’s been difficult for me to feel comfortable opening up about my CF on social media.

Years ago, I’d write lengthy posts during long hospital stays just so someone knew what I was going through. But I’d quickly delete them, concerned that the post would hurt my performing arts career and cause friends to label me “annoying.” I didn’t think my story was worth telling.

When I did open up, I regretted it, as many people reacted with pity or condescension, or appeared turned off.

I finally came out of the chronically ill closet when I had my bilateral lung transplant in June 2019. Since then, being fully transparent on social media has been a mostly positive experience for me. I’ve discovered an online family of patients and advocates who support me. Sure, I still come across a few people who can’t help but give their two cents. Their comments and labels used to get under my skin, and I was forced to remind myself that I am wonderful. Now, my virtual family does this for me.

“I never asked for this or planned it in advance./ I was merely blown here by the winds of chance.”

Healthcare professionals

Have you ever driven by a police car and automatically felt guilty, even if you haven’t done anything wrong? That’s how I used to feel walking into a doctor’s office as a child.

If my pulmonary function test results had worsened, I was labeled “noncompliant.” If I reacted to bad news with tears, I was “emotional.” If I reacted with humor, I “didn’t take things seriously.”

Doctors often ignored my mom when she fought to tell my story. At some point, she and I built up a wall to protect us from doctors’ critiques and hurtful labels.

Thankfully, we also worked with dozens of doctors who made us feel wonderful. They listened when we told our story, addressed new symptoms, and broke through the walls we had built. But I still wonder if my doctors secretly label me a hypochondriac or a complainer.

Myself

“The most celebrated/ Are the rehabilitated.”

Years of labeling myself an actress helped diminish the “patient” label that was held over my head for so many years.

Now I have many labels. Sometimes I think of myself as sarcastic and dark-humored, which isn’t every audience’s cup of tea. Other times I feel like a hypocrite because I preach about compliance then fall asleep before taking my nighttime pills. While I’ve personally never found the label “inspirational” to be insulting, I know a handful of people who do. I try to take it as a compliment.

There is no one-size-fits-all label when it comes to patient advocacy. The right people will appreciate your story, labels be damned, and give you the support that you deserve. Even when our truth is intense, sharing it is important, because it reminds people in the same boat as us that they’re not alone.

Friends, family members, and strangers reach out and tell me their stories all the time. However they think of me, I’m thankful that they’re comfortable enough to be transparent with me.

It’s taken me 29 years to realize this, but maybe I can save you some time: No matter where you are on your patient journey, and no matter how others label you, know that you’re wonderful.


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Paul met Debbie avatar

Paul met Debbie

I fully agree with your last sentence, Nicole! And the others are not half bad either.
For me the most important discovery was, that "cf patient" also is a label already. And it was a label I didn't care to identify with. Calling the way our body functions "healthy" or "diseased" is also a label that causes a crippling identification. If we are "at ease" with our body, there is no space for a dis-ease to rise in the mind. There are the symptoms of how the body functions, but no identification or judgement is necessary. The body functions as it does, it doesn't need the labels of the mind - the own mind or that of others.
My motto: don't Complain, Complete or Compare. Just Comply to what is. This is called Being. Not some one or something in particular, but just Being. Being Complete. Neverything, Everywhen and Neverywhere. It's completely free and fun. Fully surrendering to all the possibilities. I don't mind being blown as a leaf in the wind, for I am the wind as well. It takes some courage to step into this reality, but after that, all fear disappears and courage is no longer required. Just try it, you have nothing to lose but your own illusions of being separate and special. We are not. We are much bigger than Special. We are truth, full on and raw, no labels attached. We are god. The Kingdom of heaven. It's great! It's wonderful indeed! It's a f*king Miracle!

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Mary Convento avatar

Mary Convento

I love your article, Nicole. You just spoke your truth and it creates a wonderful ripple. Thank you for sharing!

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